Patient and Public Involvement

UCL IHI aims to promote a new culture of engagement between the public, patients, clinicians and researchers, based on innovative engagement practices and joint development of consent models

We are mindful of the importance of transforming the relationship between the patient, their health record and its uses for clinical care and translational research. Our Institute promotes a transparent and balanced view of the benefits of using public health and other data for research to improve patient outcomes and service delivery, and examples of how researchers use data. One of the ways we are doing this is through our #datasaveslives campaign, a public engagement campaign designed to highlight the positive impact of health informatics research on public health.

#DATASAVESLIVES

We believe public engagement should involve multi-way conversations about research and intended outcomes, with consumers and the general public involved throughout all stages in the research process. At UCL IHI, we support patient and public engagement in a number of ways:

We have an established Patient and Public Working Group and virtual panel who support the Institute in meeting its objectives and ensuring high-quality research in the public interest. The Group, which has a particular interest in healthcare records research, is actively involved in various projects and events at UCL IHI using health records data to study the risk of diseases in wide-reaching clinical areas and development of the research agenda.

We facilitate open dialogue with the public to share information about the ways in which researchers use your personal information, what the priorities for research are, and the safeguards which need to be in place to carry out our research. We are exploring new methods and technologies to help us reach wider audiences, for example tweetchats and other social media platforms.

We promote effective partnershipsto encourage partners to embed public engagement in their work from design through to dissemination and beyond. For example, patients and the public are invited to help refine research objectives and methodology to answer important new questions that can only be answered using large health datasets. We are also developing cross-cultural public engagement research by looking to extend links to leaders in the field internationally.

We provide information and support to researchers wishing to carry out public engagement activities in their research, and to maximise the quality and impact of their activities, in conjunction with established training and outreach offered by UCL.

Lay members of the public have been shown to be experts at finding unconventional and surprisingly uncomplicated solutions to problems scientists have been struggling with for years. We encourage citizen science by promoting involvement of the public in analysing data to widen research horizons and uncover new research dimensions.

There is a current skills shortage in the field of health data science. As part of the UCL Farr Academy, we are developing a schools engagement programme with the aim of introducing our young generation, and especially women and other minority groups, to the possibilities and techniques for using big health data at an early stage of their education.